Getting to Know You: The Power Direct-to-Consumer Giants Have to Understanding Our Genetics

After going back and forth for what felt like years, my curiosity won. I ordered the test and shipped off my sample. Three weeks later, the email arrived in my inbox. I logged into my online portal, scrolling past the bolded message informing of my “slightly increased risk” of Alzheimer’s Disease, instead, narrowing in on what I was looking for: how would 23andMe explain genetic risk alongside my results?

In theory, genetics offers an elegant, linear way to predict one’s future—setting up a narrative in which having “the Alzheimer’s gene” destines one to a very specific medical fate. The realities of genetics, however, are far more complex. Environmental factors, among others, mediate gene expression and diseases are usually the result of various (often unidentified) genes working together. Even considering Alzheimer’s, a disease with highly penetrant variants, my risk remains probabilistic, not destined.

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The Luxturna Debate: Why Ethics Needs a Seat at the Drug Pricing Table

By Clio Sophia Koller

Jack Hogan can now ride his bike home at dusk after an afternoon of playing with his friends. Is that childhood rite-of-passage worth $850,000?

Recently, the Health Policy and Bioethics Consortium convened by Harvard Medical School’s Center for Bioethics and the Program on Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital met to discuss the implications of Spark Therapeutics’ new gene therapy treatment—along with its staggering price tag.

Luxturna, a novel therapy approved by the FDA last year, treats a rare form of inherited blindness known as retinitis pigmentosa. The therapeutic agent targets the RPE65 gene, associated with the disorder, and is shown to improve vision in a population with progressive vision-loss and an inability to see in dim light. Read More